The bad days are really bad

[mcjmalaboot]

Just need to have a bit of a sook. The last week has been really difficult. I was in so much pain on Thursday i came home from work and went to bed with endone. I am just not handling it all. I feel like a walking drug addict ( i know compared to some this is nothing but 14 tabs a day). I feel exhausted, i can't sleep from the prednisone, and i barely eat anything at the moment. I feel like i am a mess.
I have started Imuran and have had no side effects so far which i guess is a good thing but really that is the only positive at the moment.
How do you all cope with bad days and bad weeks?
People constantly are telling me how well i look each day and act very suprised when i say i am having a bad day. I guess it the old thing that if people can't see it it is very hard to understand.
I have a great network around me. My partner is amazing and he helps out around the house and keeps my daughters in line when i am not well, my parents are also great. I have been reassured by my boss that no matter how much time i have off or what i need she will support me through this and i will alsways have a job, she is even paying me sick leave when i have none left. So in so many ways i feel so greatful.
Is this feeling of nothing and being a mess only because i am newly diagnoised? Does it get easier to handle the longer you have dealt with this. I guess easier is not the word cause i know none of us would ever have it easy but i hope you know what i mean.
Any advice, tips or help on how to deal with the bad days would be greatly appreciated. :depressed:

 

[guest78]

Im sorry you are having such a tough time.
I really struggled on pred, especially with sleep, weight gain and emotionally/psychologically. I ended up seeing an IBD counsellor who helped.
& she gave some great tips about how to tackle the days when you dont want to get out of bed!
I found that the feeling of emptiness and being a mess was down to the pred and once I was off that I felt a million times better, so yes, it does get better! & is not forever!

I was told to write a list of 10 or so things that make me really happy to do. Things which aren't very hard work and dont take too much effort. For me it was things like, baking, a warm bath, reading a book, painting my nails, internet shopping etc.
- she then suggested I do one of those things a day. Just one, and that be my goal for the day. it gave me something to focus on and a reason to get the day started and feel better
I also found getting outside made a huge difference even if it was to just walk down the street and back!

x

 

[jsesaic]

It's great that everyone around you is very supportive, but like you said they can't know how much your suffering, physically and mentally, unless they have had similar problems. I must admit i used to get very annoyed when people said i looked better, especially if i didn't feel it! I mostly coped whilst i was ill by trying to distract myself. Obviously when your in that much pain it's hard to concentrate on anything but i found tv helped. Seeing as i didn't want to go out whilst feeling like that!

Even now i'm currently feeling well, i have down days/weeks because i worry i will get ill again. I guess thats just something we all have to deal with in our own ways.

Hope you feel better soon!